Tuesday, June 30, 2015

Shock and Surprise

There is a very significant difference between a surprise and a shock. I for one love surprises because they tend to be fun and spontaneous in nature. However, a shock typically insights a negative emotion. When the body goes into shock, it's seeking to paralyze our system in order to keep us from overloading. If we knew a shocking event were going to occur before it did, it probably wouldn't hurt as much. It's the unexpected and unpreparedness that feels debilitating. For instance, when we lost a baby in between our two boys, had someone told me that I could get pregnant again very quickly, but I'd have to endure a premature baby with many special needs, I would not have been in such emotional distress when Levi was born. I would have been a little more at rest knowing what the future held. I also would not have traded getting to be Levi's mom for anything; I wouldn't go back in time and decide to remain a family of three. However, when a distressing shock impacts our children instead of ourselves, it stings that much more. As we watch little innocent lives that have been entrusted to us endure any hardship, our insides ache as if we are burning into ash. Parents want to be the "shock absorbers" for their children no matter what the situation. It feels even more painful when we are shocked at God's inability to save our young ones as we cover them with prayers of healing protection. Yet, God has no inabilities. Can we choose to trust that even He can make good out of horrific shock? Can we choose to believe in faith that he has something better than we planned? Can we choose to trust His control even when we can't breathe from the shock? As our friends endure shocking unexpected results from their son's brain surgery, I must choose to trust that God can lovingly absorb so much of their pain because that's exactly why Jesus endured the cross. We love even when we can't comprehend because that is the only way we find true peace. Please continue to pray for the McMath family- prayforwhit.com

Thank you so much for your prayers for our family as well. The meeting yesterday was a "shock" to the discharge nurse who hadn't scheduled it herself (I scheduled it on my own accord), but it ended up being part of God's perfect plan. Not only were we able to gather much of Levi's team in one place to express our sincere gratitude and obtain answers to practical in-home care questions, but the timing was perfect! Last night we were surprised to get a call from the GI doctor giving us the name of the surgeon who will be performing Levi's G-tube-FUNDO wrap surgery in two days! Levi is leaving his home at Northside tomorrow after a four month stint and heading across the street to CHOA! This was a huge surprise because we were just told yesterday morning that it probably would not occur until after the 4th of July holiday. We were also grateful to God that the neurosurgeon evaluated Levi and concluded that his muscles are still too small for a biopsy this week, so he'd rather wait until he's closer to nine months! Praise God we get more time to let Levi grow on his own accord!

It's also been a sweet blessing that our best friends are home from Italy and have dropped everything to come play with Silas during our sporadic hospital move..... Thank you Karrs!
PRAISE-
- Levi is leaving Northside and about to get tubes out of his nose and throat!
- Silas continues to remain flexible during such a crazy time in our lives!
- Our meeting was smooth, sweet, and as conclusive as possible yesterday!

PRAYER NEEDED-
- Please pray for Levi's transport tomorrow. He'll be leaving all the doctors and nurses he's come to love and know.
- Please pray for the new team taking care of Levi. He's always been a quirky and sensitive patient.
- Please pray for the surgery scheduled for Thursday afternoon. Levi will have to be under anesthesia, intubated (back on a vent), and of course all surgery comes with risks.
- Please pray that Levi responds well to the G-tube. Not only do we want him to be able to handle stomach feeds, but we really want him to get off the vent as soon as possible after surgery. If he doesn't handle the intubation well, he could end up back at Northside all over again before he can come home.
- Please pray for the surgeon who will be using Laparoscopic technology to do the surgery.
- Please pray for Matthew and I to easily understand all that will go into feeding Levi and caring for him in this new unique way when he's home.
-Please pray that Levi comes home in God's perfect timing.

Thank you so very much for your love and prayers!

- Surprised Buster

Thursday, June 25, 2015

Quick update



Without going into all the details, I am excited to say the ball seems to be rolling for little Levi. We would love your prayers as we prepare for an important meeting on Monday with his entire "care team." We have several questions that need to be answered before we take next steps, and we will sit down together to hash out the details regarding his discharge plan.

PRAISES-
- Levi has done so much better off the NG tube and only keeping his intestinal feeds going (TP tube). 
- Levi just about weighs enough for a G tube surgery!
- A different GI doctor randomly stopped by yesterday and agreed with our plan to rid him of any nasal or oral tubes and move forward with a G tube and stomach wrap!
- Levi had a successful circumcision yesterday!
- Levi passed his hearing test! But he had some fluid in his ears, so a follow-up visit will happen in the next month.
- We've had several great visits with Levi!
- Silas has been such a ball of joy!

PRAYERS-
- Questions answered during Monday's meeting.
- Decisions for other muscular tests during G tube placement.
- The right doctors and nurses on hand during upcoming procedures.
- The perfect timing for procedures and discharge dates.
- Miracles with regard to Levi's ability to eat by mouth in the future.
- Levi's continued progress with his hand and feet. 
- Sweet family time as we wait through final hospital stays. 
- Continued trust in God for what it looks like to care for Levi at home.
- Please pray for the McMath family preparing their son for brain surgery tomorrow!


We are truly truly blessed.

~CC


Tuesday, June 23, 2015

Eyes on me

Happy Father's Day daddy!
A dancer learns early on that in order to keep from getting dizzy while turning through multiple pirouettes, "spotting" is key. You have to keep your eyes on one designated spot ahead of you and maintain your eye contact with that spot as long as possible while you spin. I'm sure a tight rope walker would vouch for the same type of focus while balancing on a piece of wire. When you start to look around at your surroundings the room can begin to spin, you fear all the possible injuries that seem to currently await you, and you forget your core strength.
When Jesus told Peter to join him by foot out on the big blue sea, Peter quickly jumped at the chance as a child fearlessly jumps into his father's trustworthy arms. However, when Peter lost his focus on Jesus and began to look around, he realized the insanity of what he was doing. The wind was blowing, the water was cold and dark, and no doubt he thought about the fact that he was a mere human being walking on water! Then, he quickly began to sink, screaming for Jesus' help. Up until that moment though, he hadn't thought it was a crazy idea.

I felt a lot like Peter this past weekend. We have been working to advocate for our little man to come home sooner rather than later, but as a nearing departure date is discussed, I stopped looking up and began looking around me. How in the world can I take care of two little boys in my own home when one of them still drops his oxygen rate, coughs until he chokes, needs food through a tube in his intestines, and requires daily physical therapy? That's when God reminded me of Peter. When I take my eyes off of Jesus, I get scared and overwhelmed, but when I go back to him, I am reminded that none of this is a surprise to God. He knew Levi would be born this way, and he chose me to be his mommy. He made both my boys just for Matthew and I, and He made us for them. Moreover, when I hear about our church friends preparing their precious baby for brain surgery this week, I take a step back and realize how easy it will be to care for my children. God truly never gives us more than we can handle WITH Him. On our own, it is certainly way too much, but with His perfect life-giving hands, we are never in too deep. In fact, it will feel at times as if we are walking on water.


Currently, Levi is unable to maintain gastric feeds. He was spitting up way too much, so they took out his NG tube, and he is only getting food through one tube in his nose (the least amount of tubes he's ever had in his nose and throat) into his intestines- TP tube.

Please pray that the GI doctor who needs to reevaluate Levi will recognize Levi's need to get all tubes out of his throat. We actually believe (along with many of Levi's favorite nurses) that the surgery to put the tube directly into his stomach will be best for him.
As we wait a little longer to see how Levi does with just the one tube, we are praying:

- Levi to be home in the next 4 weeks
- Levi to get a G tube and handle stomach feeds that way
- Levi not to need any other surgeries
- Levi to stop coughing and choking (still possible reflux mixed with positional obstruction)
- Matthew, Silas, and I to be ready and prepared for Levi to come into our home

Thank you so much for your constant prayers! We have so much joy in our home, and we know that this experience has amplified the simple moments to be lasting memories... like keeping Silas up late so he can catch fireflies in our backyard.


I never really noticed that our favorite sandbox was courtesy of our favorite hospital. It felt like Levi was there with us!

God bless you!

~Water Walking Buster

Thursday, June 18, 2015

A good loss


Instead of rejoicing in our most recent news regarding Levi's clear blood test, I have sadly had two rather unsettling days. Personally, I think this happened because Satan would love nothing more than for me to neglect giving God any kind of glory, and instead work to rebuild fears regarding our future.

First off, Levi's extended continuity of care had to change. Nurses have been out, and doctors have rotated shifts. New eyes mean new opinions and new obstacles surfacing. I've heard some new information this week that I've had to process through my own lens of  experience. I have been told more than once that there is a good chance Levi will skip the whole bottle/nursing phase altogether and end up eating his first oral feedings with solid food. If you read between the lines, this prediction means Levi will have a feeding tube for at least the next nine months. I also heard the first prediction at a discharge date:  in the next month. Yet I've also learned not to take much to heart until I see it come to fruition. So much can change in this life and especially in Levi's life with the drop of a hat. There is a fine line between wanting Levi to get the most out of his medical team of experts, and wanting Levi home as soon as possible because he has a greater chance of thriving in his natural environment.

When I heard some of the differing opinions about Levi, and as we all held our breath the past few days in hopes that Levi would not hold his, I began to feel anxious. Surprisingly, I am not really anxious about my ability to care for Levi, and I am not really anxious about Levi's future. But when I sat down and thought about it, I'm anxious about losing my life.

Everyone to some degree worries about "losing" his/her life. Some people avoid faith because of this concern, while others avoid marriage and children for the very same reasons. Either way, it's a last ditch effort in wanting to maintain our control over what we assume is the best way to live our lives. Levi's eventual departure from the hospital will turn our neatly organized routine into a tailspin. I know that it is very easy to create new routines (we have already proven that these past few months), but it's a lifestyle change that I didn't anticipate.

That's when my sweet Father spoke to me again. I opened up my Bible and read Matthew 10:39: "Whoever finds their life will lose it, and whoever loses their life for my sake will find it."

What if we don't realize that by "losing" our old life multiple times means we'll finally find the life we were meant to live. It's like when parents tell their children, "You'll thank me one day." The child thinks that the cotton candy he's eating should be the only food he ever consumes again because there isn't anything better out there. Not only are there better desserts than cotton candy, but eating it every day for the rest of your life would do so much more harm than good.  

As I willingly let go of my cotton candy life, I am nervously excited about Levi entering our world soon. 

Thank you for continuing to pray!

- Levi will continue to go up slowly on his stomach feeds in hopes of getting him off his intestinal feeds. Please pray he can do this. He's coughed and vomited a lot since they started the stomach feeds, so they've increased his acid reflux meds, and we are praying his lungs will stay protected from any fluid.
- Levi will most likely be admitted to Scottish Rite once they decide on the type of feeding tube he'll need after watching him these next two weeks. Please pray that we make the right decision based on differing opinions. 
- Levi has had mild de-sats when he's refluxing, please pray that he can stay on room air!
- Levi will be re-evaluated by the neurologist next week who still wants to do a muscle biopsy even with the clear blood scan. The thought is that if he has to go under anesthesia for a stomach tube, then it'd be easy to grab a little muscle to evaluate so that we can cross everything else off the potential list of future problems. Please pray for our decision with this too. 

We have so much to be thankful for too! I can't believe the strides our little boy has made this past month. It's unbelievable to look back at his condition just a few weeks ago; it only seems possible through divine power.

Love you!

~Losing Buster


Tuesday, June 16, 2015

A lesson for all ages

Silas enjoyed his first cone with his own ice cream scoop. A magical moment.

One of life's most difficult lessons occurs shortly after your first birthday, and it's rarely ever grasped even into adulthood. I witnessed Silas' struggle with it at a recent birthday party for one of his buddies. There were of course an abundance of new toys at the party. However, when Silas saw another boy grab a nearby tractor, the two of them began a tug of war contest that I somehow ended up refereeing. When Silas didn't get to win round one, I watched him struggle to fight back intense tears of frustration. No other toy would soothe his pain; no words of wisdom could melt his impatience. Yet in a matter of moments, the boy grew bored with the simple machinery, and it was left all alone for Silas to embrace.

Thus, we begin the teachable moment... before entering any toy-infested environment we pray: God, please help us to share and take turns. If we want something we can't have, help us to wait for it patiently, or find something else to play with instead. If we never get what we want, God please help us to be utterly satisfied with the other toys in our lives. Help us to trust that you will give us the strength to wait on the perfect toy you've designed just for us, and help us to be kind and loving, shining your light to others no matter what we have in our lives. Thank you God for so much goodness we've never deserved.

Okay... we don't really pray all of that every time we go somewhere, but teaching my son always seems to teach me. The "toys" look a bit different, but the same principles apply no matter our stage of life. I am trying to pray that same prayer every time I wait on little Levi news.

PRAISES-
  • Levi's recent apnea seemed to be a "random cluster" of events. He hasn't had any since Saturday, and he's back on room air!
  • Levi's handling the stomach feeds pretty well, besides a little spit up, they continue to increase his gastric feeds and decrease his intestinal feeds!
  • Levi is 7 pounds 13 ounces!
 PRAY PLEASE-
  • Levi's doctor thinks he may have spoken too soon about the blood work. After the weekend apnea, we are anxious for the blood work and still praying we don't have to do a sleep study (it often leaves you with more questions than answers I'm told). 
  • The blood work we are waiting on at Emory for muscle tone disorders (that some of you have been faithfully praying for over a month now!) seems to be hung up somewhere. I've been told it's an expensive test, so they wait for enough orders to make it worthwhile. I've been told it's done, but the neurologist hasn't been available to "read" the results. And I've been told they are "investigating" what has taken so long. Needless to say, please pray we get it this week, and that he gets a clean bill of health with no additional testing needed!
  •  Levi is still trying "tastings," but instead of every day, they've slowed to every other day because he hasn't given a lot of positive feedback on eating by mouth. :(
  • Levi to stay on room air, and pray that he can stop spitting up and handle food in is stomach. 
  • Levi's hand and feet- mobility, range of motion, no nerve damage. 
Thank you for your faithfulness! God bless!

~Lesson Buster

Saturday, June 13, 2015

Helicoptor mom?

In the same way that nurses confess to the stereotypical truth of the "whimpy white boy," teachers also stereotype the poor kids with hovering "helicopter moms." I have sworn up and down that after my experience with said parents that I'd never be one myself. It's inevitable, though, that parents will cling a bit more to the control of their first child because every stage is in effect a new one. Have you seen that commercial with the new mom asking every single person entering her home to lather in antibacterial while she protects daughter from every possible hiccup or scraped knee. Then, the second child arrives, and she asks the grease-covered mechanic to please hold him while she gets her checkbook. The reason this commerical is funny is because we all know it tends to be true.

I thought that I was pretty adventerous with Silas though, (taking him out of the country, not calling the doctor every time he was sick, etc.) but of course we can only view things from our own perspective, not someone else's. I find myself already anxiously concerned about the influences and foundations that are being laid in Silas' life. Shouldn't this parental stress assume itself when Silas is older and his peers are of greater influence than his parents? Yet it's not as black and white as we would like to imagine. If it were that simple, then we'd all follow a formula and always get the same solution. No matter how hard we try, no matter how many books we read, no matter how many people we talk to, we are a flawed race that creates flawed children. It is only by the grace of God that we can forgive each other our mistakes and seek to better ourselves. 

Since I cannot control the physical development of my second son, I think I'm more eager to control the emotionl and spiritual development of my first. One would assume that I've learned a great deal about giving up parental control since Levi is under the care of complete strangers, twenty-four hours a day, but like most of life's hardest lessons, I doubt I'll conquer this one the first, second, or even third time I'm tested. As stated many times before, there is peace in recognizing none of us is ever in control of the outcome. We simply learn what to eliminate in order to have a clearer picture for fighting against the next hardship. This is exactly what the doctors are doing for Levi again today- 

--After several great days with Levi, he started having Apnea again last night and I was witness to many episodes this morning. Thus, the doctor has him back on a fraction of oxygen (low flow canula) until they can figure out the issue. It may be the NG feedings (his stomach can't handle food), it may be something neurologic (still waiting on blood work), it may be that they stopped his caffeine to soon (sleep study has been ordered for next week). We wait, we sigh, we choose to trust and take every moment as it's given to us. 

Thank you for continuing to pray. I am encouraged by so many other people facing so many of their own mountains, yet still anxious to help us get to the top of ours. 

God bless you!

Thursday, June 11, 2015

Lost sheep

 Silas recently flipped forcefully through the delicate pages of my worn Bible and said "mommy read this!" In an effort to maintain my precious reading time, I decided to tell him one quick parable in the most enthusiastic way I could muster. I assumed he'd be bored with Biblical history in a hurry and shut my Bible while loudly pronouncing, "All done!" as he's done so many times before. But for some reason this time he was enthralled with the story of the Lost Sheep. While it might have something to do with my over-dramatic pronunciations and hand gestures, I think deep down, we are all amazed by a man who would leave all of his secured income to chase after one tiny component of his employment.
Now, Silas wants me to read the "sheep story" every time he catches a glimpse of me reading God's word. After multiple recitations, it struck me again how amazing it is to be loved by God. It's not about the man trying to maintain his livelihood. Rather, it's the love of a parent for his children. It doesn't matter whether your child portrays all your loving discipline in public or not, or whether he/she expresses his/her love in return on a regular basis. No. Mothers and fathers would travel across fire and ice to save their babies. They'd give up delicious dairy; they'd give up their profession; most parents would give their right arm, if not their very life, to ensure the safety and well-being of their offspring.
This Earthly love doesn't compare to that which our Father in Heaven possesses for each one of us. He comes after each one of us with a zeal we will never comprehend, and if we are too busy to recognize his love and pursuit, he just pursues us harder. It really takes my breath away and gives me true peace to experience that kind of love.
I understand that love a bit more as I have become a parent myself. I am blessed to learn forced selflessness and know that no matter how many days I get to have my children under my wing, I am forever held in the arms of my God. He keeps carrying us through, and I am forever amazed.

Here's the latest on Levi:
I am still waiting to hear about the blood tests for muscle tone, but two great notes on that. First, I thank you for praying because I have not been anxious or struggled with waiting on those results all week. Second, Levi's doctor said he'd be VERY surprised if the blood came back with anything. He said Levi's muscle tone has improved so much and his facial structure looks good and normal, so he won't need any further testing if the tests are clear!YAY!

Levi got his first taste of fresh air and sunshine yesterday! He's on room air!!!! And his doctor and our favorite nurse decided to take him outside for a minute because he seemed so bored in his room! I wasn't there for the monumental moment, but I had left a disposable camera for any nurse to snap a shot of little Levi. I can't wait to go develop that film. What a fun surprise that we never experience anymore: film development! :)

Levi has had some "positive tastings" the last few days. He was seen by a GI doctor regarding how to send him home on a feeding tube, and both the doctor and the therapist believe Levi will eventually be able to eat by mouth, it may just take several months of feeding therapy.

Levi has had some good movement in his right arm, but the therapists noticed some slowness in the right side of his tongue. It seems apparent that the entire right side of his body must have been smashed in the uterus because his right hand and right foot are worse and now the right side of his mouth.

Please pray for Levi:
- stay on room air
- do well with gastric tube feedings (slowly moving feeding tube to his stomach instead of intestines which is much easier to care for at home)
- learn to swallow his saliva so he can learn to eat by mouth
- improve all muscles on the right side of his body

We are encouraged and overjoyed at his great progress! Still could be several weeks before he's home, but we are so thankful for his Northside care and the new team of specialists that we'll get to know once discharged. 

With love and joy,
~Coffee CubBuster
 

Tuesday, June 9, 2015

Greener Grass

The word "covet" is one of those "churchy" words that you rarely use outside of Biblical understanding; however, here's how Mirriam Webster defines covet:

:  to wish for earnestly <covet an award>
:  to desire (what belongs to another) inordinately or culpably
 
Coveting comes quite naturally as one sees in young children. They are usually only fighting over a toy when the other finds it interesting. It's not until someone else has something we can see that we want it. Without the visual reminder, we rarely struggle because the comparison is nonexistent. 
 
Likewise, I find myself strangely envious of very pregnant women these days. One would assume I'd feel somewhat lucky that I eluded the difficult third trimester. No swollen limbs; no uncomfortable sleep; no aching, stretching, or excessive weight gain. But I really would take all of that in stride and joy if I could trade the difficulties of the past few months. Then it hits me- other people are probably looking at my sweet Silas, or my little Levi completely jealous that God has blessed me with these precious lives I get to call my own children. It's easy to view what we lack. It's rather rare to focus on what we've been spared because we can't comprehend the millions of hardships we will never encounter. Thanks be to God!

Even though Levi didn't follow my ideal birth plan, I surprisingly would love to have more children. We have no clue what this looks like, of course, and I haven't even brought my second child through my front door yet, but for some strange reason (even with unclear odds that we'd repeat this scenario), I still find myself desirous of more babies. Maybe because I lost one and have fought so hard for the other, but I just think it's an absolute miracle to watch children grow. Like this little man growing up every day before my eyes-

Real men always choose pink. :)

Beyond blessed that we have so many loving friends to come play when mommy and daddy need to be with Levi

No matter how busy they are, our friends change their plans to love our Silas. Thank you!

We've had news that could be seen as negative, but I'm choosing to see how green our grass is and look at it from a different perspective (it doesn't always come naturally, but I must choose this route with much conviction). 

PRAISES
  • Levi may try ROOM AIR later this week.... will keep you posted!
  • Levi has had more movement in his weak arm!
  • I went dairy-free for a month, and they still have 25 days worth of milk for my man, so I get to take a break and enjoy my cheesy, buttery, milk delights again!
  • Levi weighed in last night at 7 pounds 7 ounces!
  • Levi is showing some "normal" behavior when given "tastings" of milk (interest, mouth movement, etc.).
  • We had a great visit with Levi last night and this morning!
PRAYER PLEASE
  • The OT said that Levi's tastings are not progressing enough, and she believes he wouldn't be able to handle a "swallow study." Without a miracle or LOTS of time (months worth of therapy), she thinks it would be too traumatic to try to give him a bottle because his swallowing is so delayed. Once we check off other things, we may be looking at some type of permanent feeding tube coming home. Praying for that miracle though!
  • Still waiting to hear about muscular disorder blood results.... Hope to hear later today...
  • The doctor still wants to do a "sleep study" to check and see what's happening with Levi's neurological senses, which means he'll have to get off caffeine to see if he has finally developed his natural ability to breathe on his own. 
  • Still waiting to hear from the hand surgeon's analysis too.
  • We still have NO clue when Levi will come home; peace as we wait on God's perfect timing and not worry about what we will or will not deal with when that time comes. 
We are so blessed in so many ways. I hope you feel the same way today!  Thank you for loving us so well!
 
 ~Greener Buster

Thursday, June 4, 2015

Another letter to Levi

Levi,

I cannot believe you are already three months old. I've never been more proud of you my sweet, second son. I am watching you fight to swallow, cry as hard as you can, and try your best to communicate with all who care for you. I hope and pray that you won't have any more setbacks, that your muscles will develop properly, that you'll come home healthy and able to eat, and most of all, that my voice and my arms will give you comfort even though they've been absent so much these past few months.

Every mother wants jealously to be the one her children run to for love and care, just as our true Father desires for us to run to Him first. I understand that jealousy a little more now as I watch you recognize the voices of your sweet nurses. I want desperately to make your life easier, but I remember that this is just the first of many trials in your life of which I can only sit an the sidelines and call out that I love you! I try not to think too much about how little we see each other in a 24 hour period because I think I would break down in unmerited motherly guilt. You are receiving phenomenal care, and I'm told you are the cutest baby on the floor! Every female nurse from miles around comes to "check on you." This makes my heart smile, but I pray that no matter how little time you spent in me prior to entering the world, you will still know that I have always been and will always be the first woman in your life.

I trust and believe that God's will is perfect for you, and I continue to yearn for the day we can get better acquainted. Thank you Levi for looking at the world with such fresh eyes. Thank you for not following or conforming to the "normal" preemie pattern. Thank you for giving people a chance to see God work miracles. Thank you for letting me love you from afar, and thank you for teaching me so very much. I feel as thought I barely know you, yet I love you as if I've known you all my life. Please never start conforming; rather, maintain a path that belongs only to you!

I love you Levi.


Praises!
~Levi is 7 pounds!
~Levi started "tastings" successfully. Similar to a wine tasting, Levi gets to start slow with smelling, and familiarizing himself with milk by mouth before they actually give him a bottle or allow him to nurse. They want to go very slow so that he doesn't gag, aspirate, or have a negative experience with eating, which can stay with him the rest of his life!
~Levi is doing great and on the last 1/64 (yes a fraction) liter of oxygen (the very last amount he can get before being on room air).

Prayers!
~The orthopaedist said Levi's therapy and new splints look good, but there is a concern for his hand, so they want him to see a specialized "hand surgeon" just to get evaluated and watch him closely.
~Levi needs to be able to take down a significant amount of milk before he can do the "swallow" study. If he can't handle eating by mouth, then we are back to discussions with ENT, Plastic surgeons, and Neurologists. If he aspirates during tastings, there's a chance he could end up back on a ventilator if it causes him too much stress (imagine the worst case of something going down your wind pipe- terrible feeling). He has a very high palate in his mouth, which could be the root cause of a lot of his swallow issues. We pray he learns to compensate and outgrow this.
~Levi still seems to drop his stats a little when he's refluxing or trying to swallow too much saliva (hence the only reason he's still on a little oxygen because they can turn it up in those moments). He's on a new form of acid reflux med. Prayers this gets under control so that he can be on room air and only worry about his physical therapy and occupational therapy moving forward.

Love you all!

~Jealous Buster

Tuesday, June 2, 2015

Doubt it



Why is it that so often when we get exactly what we've been asking for, we begin to doubt it's actually a good thing? Maybe it's just me, but too often when one of my wishes comes true, I believe it's "too good to actually be true." When that perfect guy comes along, we know that there's some secret we have yet to uncover. When our toddler finally sleeps in a little late, we decide it's a bad sign, and he must be coming down with a new virus. When our little Levi is finally on the "low flow" (last stage of oxygen) I hold my breath and wait for him to get "too tired" again and end up back on the ventilator.

Yes that's right.... for the past 24 hours, little Levi has been on the "low flow," or the "old man tank" as I like to call it, with just fractions of 100 percent oxygen streaming in his nostrils.

Instead of jumping for joy, I became the proverbially "doubting Thomas." In reality this is just a heart guarding mechanism that we all possess. If you've ever been disappointed, suddenly taken back, or sadly shocked, you begin to guard your heart in such a way that can make you cynical. It's like those callouses I thought I was building up for the last leg of the marathon. However, if the callouses end up on your heart instead of your heals, there ends up little joy at the finish line.

After celebrating Levi's supposed due date on Saturday, with some non-dairy angel food cake, we've witnessed Levi hit a small stride! It's all very encouraging, yet there are still a ton of enigmas floating around our baby's hospital bed. As I watched another hall-mate move their infant up to the seventh floor, and as I ask for yet another parking pass extension, I must choose to celebrate our small victories instead of moaning over our future hurdles.

One of my favorite books of the Bible  (besides first John) is Ecclesiastes because I think I could read it a thousand times and still be mind boggled. However, one of the over-arching themes centers around the idea that there is really no contentment in this life without God. It says that we should enjoy the "lot" we are given; otherwise we will keep chasing after some "better" tomorrow that doesn't exist.


So I count my blessings- 
Levi is getting better by the day!
I could eat him up sometimes (and he's dairy free!)
Levi also had another successful eye exam. He doesn't need another one for a month this time!
Silas can be the sweetest boy ever sometimes!
One of our best friends ever!
The train "conductor" can play at his station for hours on end!
 

We continue to pray hard:

- The blood work results regarding muscular issues won't be back for another week! Patience is a true virtue, but time can be a blessing too!
- Levi may begin the swallow study this week if doctors think he's ready, and I've been warned not to get my hopes up- that he may have a "very difficult time eating" and need a lot of therapy if not a more permanent feeding tube (which would be better than surgery).
- Levi is going to see an orthopaedic doctor this week regarding his hand and feet. He may have some nerve damage in his hand.
- Levi needs to stay strong lung-wise so that we can continue to progress towards getting him home.
- Levi is still on several different meds. Praying that as he weens from these meds, he doesn't struggle respiratory-wise.

Thank you so much for your prayers and love!

~Doubting Buster